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1.  Health literacy, numeracy, and interpretation of graphical breast cancer risk estimates 
Objective
Health literacy and numeracy are necessary to understand health information and to make informed medical decisions. This study explored the relationships among health literacy, numeracy, and ability to accurately interpret graphical representations of breast cancer risk.
Methods
Participants (N = 120) were recruited from the Facing Our Risk of Cancer Empowered (FORCE) membership. Health literacy and numeracy were assessed. Participants interpreted graphs depicting breast cancer risk, made hypothetical treatment decisions, and rated preference of graphs.
Results
Most participants were Caucasian (98%) and had completed at least one year of college (93%). Fifty-two percent had breast cancer, 86% had a family history of breast cancer, and 57% had a deleterious BRCA gene mutation. Mean health literacy score was 65/66; mean numeracy score was 4/6; and mean graphicacy score was 9/12. Education and numeracy were significantly associated with accurate graph interpretation (r = 0.42, p < 0.001 and r = 0.65, p < 0.001, respectively). However, after adjusting for numeracy in multivariate linear regression, education added little to the prediction of graphicacy (r2 = 0.41 versus 0.42, respectively).
Conclusion
In our highly health-literate population, numeracy was predictive of graphicacy.
Practice implications
Effective risk communication strategies should consider the impact of numeracy on graphicacy and patient understanding.
doi:10.1016/j.pec.2010.04.027
PMCID: PMC4041683  PMID: 20554149
Health literacy; Numeracy; Graphicacy; Breast cancer; Risk communication
2.  Development and Evaluation of a Decision Aid for BRCA Carriers with Breast Cancer 
Journal of genetic counseling  2011;20(3):294-307.
BRCA+ breast cancer patients face high risk for a second breast cancer and ovarian cancer. Helping these women decide among risk-reducing options requires effectively conveying complex, emotionally-laden, information. To support their decision-making needs, we developed a web-based decision aid (DA) as an adjunct to genetic counseling. Phase 1 used focus groups to determine decision-making needs. These findings and the Ottawa Decision Support Framework guided the DA development. Phase 2 involved nine focus groups of four stakeholder types (BRCA+ breast cancer patients, breast cancer advocates, and genetics and oncology professionals) to evaluate the DA’s decision-making utility, information content, visual display, and implementation. Overall, feedback was very favorable about the DA, especially a values and preferences ranking-exercise and an output page displaying personalized responses. Stakeholders were divided as to whether the DA should be offered at-home versus only in a clinical setting. This well-received DA will be further tested to determine accessibility and effectiveness.
doi:10.1007/s10897-011-9350-4
PMCID: PMC3531556  PMID: 21369831
BRCA1; BRCA2; breast cancer; decision aid; decision-making; genetic counseling; mastectomy; oophorectomy
3.  A randomized trial examining the impact of communicating genetic and lifestyle risks for obesity 
Obesity (Silver Spring, Md.)  2016;24(12):2481-2490.
Objective
Genetic testing for obesity is available directly to consumers, yet little is understood about its behavioral impact and its added value to non-genetic risk communication efforts based on lifestyle factors.
Methods
A randomized trial examined the short-term impact of providing personalized obesity risk information, using a 2×2 factorial design. Participants were recruited from the Coriell Personalized Medicine Collaborative (CPMC) and randomized to receive 1) no risk information (control), 2) genetic risk, 3) lifestyle risk, or 4) combined genetic/lifestyle risks. Baseline and 3 month follow-up survey data were collected. Analyses examined the impact of risk feedback on intentions to lose weight and self-reported weight.
Results
A total of 696 participants completed the study. A significant interaction effect was observed for genetic and lifestyle information on intent to lose weight (p=0.0150). Those who received genetic risk alone had greater intentions at follow-up, compared to controls (p=0.0034). The impact of receiving elevated risk information on intentions varied by source and combination of risks presented. Non-elevated genetic risk did not lower intentions. No group differences were observed for self-reported weight.
Conclusions
Genetic risk information for obesity may add value to lifestyle risk information depending on the context in which it is presented.
doi:10.1002/oby.21661
PMCID: PMC5127396  PMID: 27891830
genetic testing; FTO; risk communication; health behavior; clinical utility; motivation
4.  Toward a modern science of obesity at Washington University 
In our Cancer Prevention Program at Washington University in Saint Louis (WUSTL) we have made extraordinary efforts to create the kind of cancer prevention and control program that is both translational (TS) and transdisciplinary (TD) in nature, to accelerate the march from basic discoveries to population change. Here we present an overview of our obesity related research currently ongoing in our Center, paying particular attention to both the translational transdisciplinary process and to community-based participatory research. We end with our future directions for improving obesity related cancer outcomes research.
doi:10.1158/1940-6207.CAPR-15-0060
PMCID: PMC4930676  PMID: 27059763
Transdisciplinary research; Translational research; obesity; cancer
5.  Meausures of organizational characteristics associated with adoption and/or implementation of innovations: A systematic review 
Background
This paper identifies and describes measures of constructs relevant to the adoption or implementation of innovations (i.e., new policies, programs or practices) at the organizational-level. This work is intended to advance the field of dissemination and implementation research by aiding scientists in the identification of existing measures and highlighting methodological issues that require additional attention.
Methods
We searched for published studies (1973–2013) in 11 bibliographic databases for quantitative, empirical studies that presented outcome data related to adoption and/or implementation of an innovation. Included studies had to assess latent constructs related to the “inner setting” of the organization, as defined by the Consolidated Framework for Implementation Research.
Results
Of the 76 studies included, most (86%) were cross sectional and nearly half (49%) were conducted in health care settings. Nearly half (46%) involved implementation of evidence-based or “best practice” strategies; roughly a quarter (26%) examined use of new technologies. Primary outcomes most often assessed were innovation implementation (57%) and adoption (34%); while 4% of included studies assessed both outcomes. There was wide variability in conceptual and operational definitions of organizational constructs. The two most frequently assessed constructs included “organizational climate” and “readiness for implementation.” More than half (55%) of the studies did not articulate an organizational theory or conceptual framework guiding the inquiry; about a third (34%) referenced Diffusion of Innovations theory. Overall, only 46% of articles reported psychometric properties of measures assessing latent organizational characteristics. Of these, 94% (33/35) described reliability and 71% (25/35) reported on validity.
Conclusions
The lack of clarity associated with construct definitions, inconsistent use of theory, absence of standardized reporting criteria for implementation research, and the fact that few measures have demonstrated reliability or validity were among the limitations highlighted in our review. Given these findings, we recommend that increased attention be devoted toward the development or refinement of measures using common psychometric standards. In addition, there is a need for measure development and testing across diverse settings, among diverse population samples, and for a variety of types of innovations.
Electronic supplementary material
The online version of this article (doi:10.1186/s12913-017-2459-x) contains supplementary material, which is available to authorized users.
doi:10.1186/s12913-017-2459-x
PMCID: PMC5569532  PMID: 28835273
Systematic review; Organizational characteristics; Measures; Innovation; Adoption and implementation; Innovations; Consolidated framework for implementation research
6.  A multilevel health promotion intervention in minority-owned workplaces 
Introduction
Changing health behaviors and health-related environments is important in reducing chronic disease. Minority workplaces are potential venues to provide regular, effective health promotion opportunities to underserved individuals. The purpose of this study was to test the feasibility of changing workplace policy, programs, and practices in minority-owned workplaces.
Methods
Four minority Native American-owned businesses were recruited to participate in this study. The intervention was a set of recommended standards and guidelines gleaned from the US Preventive Task Force and The Community Guide relevant to workplaces. Each workplace selected between 4 and 6 target areas to improve over the year-long intervention period. The evaluation tool was a semi-structured survey conducted at baseline and at one-year follow-up, with workplace staff responsible for benefits and services to employees. Feasibility was evaluated by assessing the likelihood that the workplaces implemented health promotion activities in the year-long intervention.
Results
Several practices and policies changed significantly during the intervention in the four workplaces, including coverage for nicotine replacement therapy (NRT), elimination of out of pocket costs for screening and tobacco cessation, accountability systems for providers, posted stair use, cessation line availability that included NRT, offering weight loss programs, offering physical activity programs, and conducting targeted communication programs about health promotion. Other practices and polices changed in the expected direction, but were not significant.
Conclusion
Changing workplace programs, practices, and policies is feasible in minority workplaces, with support and tools provided by outside organizations. These findings could drive a full-scale test of the intervention in minority businesses in order to improve the health of disadvantaged workers.
doi:10.1007/s40615-015-0093-z
PMCID: PMC4673683  PMID: 26693135
Workplace health promotion; Minority business; Native American; Policy change
7.  Effects of a web-based intervention on women’s breast health behaviors 
Helping women make choices to reduce cancer risk and to improve breast health behaviors is important, but the best ways to reach more people with intervention assistance is not known. To test the efficacy of a web-based intervention designed to help women make better breast health choices, we adapted our previously tested, successful breast health intervention package to be delivered on the Internet, and then we tested it in a randomized trial. We recruited women from the general public to be randomized to either an active intervention group or a delayed intervention control group. The intervention consisted of a specialized website providing tailored and personalized risk information to all participants, followed by offers of additional support if needed. Follow-up at one-year post randomization revealed significant improvements in mammography screening in intervention women compared with control women (improvement of 13 percentage points). The intervention effects were more powerful in women who increased breast health knowledge and decreased cancer worry during intervention. These data indicate that increases in mammography can be accomplished in population-based mostly insured samples by implementing this simple, low resource intensive intervention.
doi:10.1007/s13142-016-0439-z
PMCID: PMC5526799  PMID: 28097625
Randomized trial; Mammography screening; Web/Internet intervention; Genetic testing
8.  Pilot and Feasibility Test of a Mobile Health-Supported Behavioral Counseling Intervention for Weight Management Among Breast Cancer Survivors 
JMIR cancer  2016;2(1):e4.
Background
Health behavior and weight management interventions for cancer survivors have the potential to prevent future cancer recurrence and improve long-term health; however, their translation can be limited if the intervention is complex and involves high participant burden. Mobile health (mHealth) offers a delivery modality to integrate interventions into daily life routines.
Objective
The objective of this study was to evaluate the effects of a one-group trial with a pre-post evaluation design on engagement (use and acceptability), physiological (weight), behavioral (diet and physical activity), and other secondary outcomes.
Methods
The 10-week intervention consisted of mHealth components (self-monitoring of selected diet behaviors via daily text messages, wireless devices to automatically track weight and steps) and 4 motivational interviewing–based technology-assisted phone sessions with a nonprofessionally trained counselor. Participants were overweight breast cancer survivors who had completed treatment and owned a smartphone. Weight was measured objectively; diet and physical activity were measured with brief self-reported questionnaires.
Results
Ten women participated; they had a mean age of 59 years (SD 6), 50% belonged to a racial or ethnic minority group, 50% had some college or less, and 40% reported using Medicaid health insurance. Engagement was high: out of 70 days in total, the mean number of days recording steps via the wristband pedometer was 64 (SD 7), recording a weight via the scale was 45 (SD 24), and responding to text messages was 60 (SD 13); 100% of participants completed all 4 calls with the counselor. Most (90%) were very likely to participate again and recommend the program to others. Mean weight in pounds decreased (182.5 to 179.1, mean change −3.38 [SD 7.67]), fruit and vegetable daily servings increased (2.89 to 4.42, mean change 1.53 [SD 2.82]), and self-reported moderate physical activity increased in metabolic equivalent of task (MET) minutes per week (2791 to 3336, mean change 545 [SD 1694]).
Conclusions
Findings support the conduct of a fully powered trial to evaluate the efficacy of mHealth as a feasible intervention modality for breast cancer survivors. Future research should employ accelerometer-based physical activity assessment and consider development of an all-in-one app to integrate devices, messaging, and educational content and other mHealth approaches to support behavioral counselors conducting weight management interventions.
Trial Registration
ClinicalTrials.gov NCT02387671; https://clinicaltrials.gov/ct2/show/NCT02387671 (Archived by WebCite at http://www.webcitation.org/6hGEuttbZ).
doi:10.2196/cancer.5305
PMCID: PMC5066594  PMID: 28410174
telemedicine; survivors; breast neoplasms; health behavior; body weight
9.  Genetic causal beliefs about obesity, self-efficacy for weight control, and obesity-related behaviours in a middle-aged female cohort 
Psychology & health  2016;31(4):420-435.
Objective
Obesity is a heritable condition with well-established risk-reducing behaviours. Studies have shown that beliefs about the causes of obesity are associated with diet and exercise behaviour. Identifying mechanisms linking causal beliefs and behaviours is important for obesity prevention and control.
Design
Cross-sectional multi-level regression analyses of self-efficacy for weight control as a possible mediator of obesity attributions (diet, physical activity, genetic) and preventive behaviours in 487 non-Hispanic White women from South King County, Washington.
Main Outcome Measures
Self-reported daily fruit and vegetable intake and weekly leisure-time physical activity.
Results
Diet causal beliefs were positively associated with fruit and vegetable intake, with self-efficacy for weight control partially accounting for this association. Self-efficacy for weight control also indirectly linked physical activity attributions and physical activity behaviour. Relationships between genetic causal beliefs, self-efficacy for weight control, and obesity-related behaviours differed by obesity status. Self-efficacy for weight control contributed to negative associations between genetic causal attributions and obesity-related behaviours in non-obese, but not obese, women.
Conclusion
Self-efficacy is an important construct to include in studies of genetic causal beliefs and behavioural self-regulation. Theoretical and longitudinal work is needed to clarify the causal nature of these relationships and other mediating and moderating factors.
doi:10.1080/08870446.2015.1115503
PMCID: PMC4769980  PMID: 26542069
obesity; causal beliefs; self-efficacy; diet behaviour; physical activity; genetic attributions
10.  Measuring Sexual and Gender Minority Populations in Health Surveillance 
LGBT Health  2017;4(2):82-105.
Abstract
Purpose: Sexual and gender minorities (SGMs) are underrepresented and information about SGMs is difficult to locate in national health surveillance data, and this limits identification and resolution of SGM health disparities. It is also not known how measures of sexual orientation and transgender-inclusive gender identity in health surveillance compare with best practice recommendations. This article reviews and summarizes the publicly available, English language, large-scale, rigorously sampled, national, international, and regional data sources that include sexual orientation or transgender-inclusive gender identity and compares measures with best practice guidelines.
Methods: A systematic review was undertaken of national, international, state, and regional health surveillance data sources. Data sources that measured sexual orientation or transgender-inclusive gender identity and met seven inclusion criteria were included.
Results: Forty-three publicly accessible national, international, and regional data sources included measures of sexual orientation and transgender-inclusive gender identity and health. For each data source, sampling design, sample characteristics, study years, survey questions, contact persons, and data access links are provided. Few data sources met best practice recommendations for SGM measurement: 14% measured all three dimensions of sexual orientation (identity, behavior, attraction) as recommended by the Sexual Minority Assessment Research Team. No data sources measured transgender-inclusive gender identity according to the Gender Identity in U.S. Surveillance-recommended two-step method of measuring sex assigned at birth and current gender identity.
Conclusions: This article provides a much needed detailed summary of extant health surveillance data sources that can be used to inform research about health risks and disparities among SGM populations. Future recommendations are for more rigorous measurement and oversampling to advance what is known about SGM health disparities and guide development of interventions to reduce disparities.
doi:10.1089/lgbt.2016.0026
PMCID: PMC5404274  PMID: 28287877
gender identity; public health surveillance; population health; quantitative data sources; sexual orientation; transgender
11.  Culturally adapting a physical activity intervention for Somali women: the need for theory and innovation to promote equity 
There is pressing need for innovation in clinical research to more effectively recruit, engage, retain, and promote health among diverse populations overburdened by health disparities. The purpose of this study is to provide a detailed illustration of the cultural adaptation of an evidence-based intervention to bolster translational research with currently underserved communities. The cultural adaptation heuristic framework described by Barrera and colleagues is applied to the adaptation of a physical activity evidence-based intervention with adult Somali women. Widespread changes were required to ensure program feasibility and acceptability, including the reduction of assessment protocols and changes discordant with current trends in physical activity research. The cultural adaptation of evidence-based interventions offers an important mechanism for reducing health disparities. Improved reporting standards, assessment of features relevant to underserved communities, and greater funding requirements to ensure better representation are needed to promote more widespread access for all people.
doi:10.1007/s13142-016-0436-2
PMCID: PMC5352647  PMID: 27558245
Cross-cultural research; Cultural adaptation; Health disparities; Translational research; Physical activity interventions; Refugee research
12.  Initiation of universal tumor screening for Lynch syndrome in colorectal cancer patients as a model for the implementation of genetic information into clinical oncology practice 
Cancer  2015;122(3):393-401.
BACKGROUND
Lynch syndrome confers a hereditary predisposition to colorectal and other cancers. Universal tumor screening (UTS) for Lynch syndrome is recommended by several professional societies, but implementation can be complex. We describe the evaluation, process development, and initiation of Lynch syndrome UTS at our institution, a tertiary referral cancer center.
METHODS
A multidisciplinary team developed the new process design. Issues in five themes were noted: timing, funding, second opinion patients, result processing, and the role of genetics providers. A committee approach was used to examine each issue for process improvement development.
RESULTS
The issues related to testing were addressed individually for successful implementation of UTS at the institutional level. In the “conventional care” period, 9/30 (30%) cases received Lynch syndrome screening and four cases were referred to medical genetics. During the six months following implementation of “UTS,” 32/44 (73%) patients received Lynch syndrome screening. The 12 unscreened patients all had identified reasons for non-screening (e.g. financial limitations). Ten patients were referred to medical genetics, from which no new cases of Lynch syndrome were identified, but a low-risk APC variant was detected in one individual.
CONCLUSIONS
Implementation of effective Lynch syndrome UTS can feasibly alter practice at the institutional level. Our experience with the assessment and management of issues relevant to successful implementation of a new clinical care paradigm based on emerging technology has implications for the uptake of advances across molecular oncology into clinical practice, which is highly relevant in the current era of rapidly evolving genomics technology.
doi:10.1002/cncr.29758
PMCID: PMC4724321  PMID: 26480326
Lynch syndrome; genetics; genomics; molecular oncology; microsatellite instability
13.  Low-fat dietary pattern intervention and health-related quality of life: The WHI randomized controlled Dietary Modification trial 
Background
Intensive dietary intervention programs may lead to benefits in vitality and other components of health quality. The Women’s Health Initiative (WHI) Dietary Modification (DM) intervention includes a large randomized controlled trial of an intensive intervention.
Objective
To evaluate whether the intervention is associated with improved health-related quality of life (HRQoL) subscales, overall self-reported health, depressive symptoms, cognitive functioning, and sleep quality.
Design
Randomized controlled trial was analyzed as intent to treat.
Participants
Between 1993 and 1998, 48,835 women aged 50 to 79 years were recruited by 40 clinical centers across the United States. Eligibility included having fat intake at baseline ≥32% of total calories, and excluded women with any prior colorectal or breast cancer, recent other cancers, type-1 diabetes, medical conditions with predicted survival less than three years.
Intervention
Goals were to reduce calories from fat to 20%, increase vegetables and fruit to 5+ servings and increase grain servings to 6+ servings a day. During the first year, 18 group sessions were held, with quarterly sessions thereafter.
Main Outcome Measures
RAND 36-Item Health Survey was used to assess HRQoL at baseline, year 1, and close-out (about 8 years post randomization), and estimate differential HRQoL subscale change scores.
Statistical analysis performed
Mean change in HRQoL scores (year 1 minus baseline) were compared by randomization group using linear models.
Results
At one year, there was a differential change between intervention and comparison group of 1.7 units (1.5, 2.0) in general health associated with the intervention. DM intervention improved physical functioning by 2.0 units (1.7, 2.3), vitality by 1.9 units (1.6, 2.2), and global QOL by 0.09 units (0.07, 0.12). With the exception of global QOL, these effects were significantly modified by BMI at baseline.
Conclusions
DM intervention was associated with small, but significant improvements in three health related quality of life subscales: general health, physical functioning, and vitality at one year follow-up, with the largest improvements seen in the women with the greatest baseline BMI.
doi:10.1016/j.jand.2015.07.016
PMCID: PMC4733402  PMID: 26384466
Health-related-quality of life; Dietary Intervention; Postmenopausal; Body Mass Index; Randomized Controlled Trial
14.  Information and communication technology use by female residents of public housing 
mHealth  2016;2:39.
Background
Evidence suggests that Internet, mobile, or social media based-interventions may promote obesity-lowering behavior change, which has implications for cancer prevention and control interventions. However, the uptake of communication technologies among low socioeconomic status individuals, who need obesity management strategies most, is unclear.
Methods
Using the baseline data from a cluster-randomized behavioral intervention trial, we examined the cross-sectional associations of frequency of information and communication technologies (ICT) use among female public housing residents, as well as the variation of ICT use across demographic and health-related variables.
Results
ICT use was common among female public housing residents, with mobile use for calls and texts most prevalent (97% and 84%, respectively). Internet, social media, and health information users tended to be younger compared to non-users. Email, Internet, multimodal, and health information users were more likely to be born in the U.S. and be more highly educated than non-users. Social media and health information users were more likely to be Spanish speakers and people of Hispanic ethnicity compared to non-users, although this was not statistically significant. There were few differences according to obesity or physical activity level.
Conclusions
Our findings of differential socio-demographics between users vs. non-users suggests that future cancer prevention and control interventions among public housing residents should consider selecting ICT that are aligned with the usage patterns of different groups making up the intended audience.
doi:10.21037/mhealth.2016.10.01
PMCID: PMC5148151  PMID: 27942534
Medical informatics; health status disparities; public housing
15.  A Framework for Training Transdisciplinary Scholars in Cancer Prevention and Control 
Traditionally, postdoctoral training programs largely have focused efforts within a single discipline or closely related fields. Yet, addressing the complex questions around cancer prevention and control increasingly requires the ability to work and communicate across disciplines in order to gain a perspective that encompasses the multi-level and multi-faceted issues involved with this public health issue. To address this complexity, a transdisciplinary training program was implemented to cultivate the professional and scientific development of the postdoctoral fellows in UNIVERSITY NAME BLINDED FOR REVIEW and NCI-funded centers (BLINDED FOR REVIEW). Fellows are matched with primary mentors and assemble a multi-disciplinary mentoring team. Structured programs support the transition of fellows from disciplinary trainees to independent transdisciplinary scholars and provide exposure to multiple disciplines. This article describes the training program, challenges encountered in implementation, solutions to those problems, and the metrics employed to evaluate the program's success. The goal of the program is to train emerging investigators in the conceptual bases, language, and practices that underlie a transdisciplinary perspective on cancer prevention and control research, to create an infrastructure for continued cross-discipline dialogue and collaboration, and to develop disseminable strategies for such training.
doi:10.1007/s13187-014-0771-2
PMCID: PMC4469633  PMID: 25510368
16.  Predictors of recruited melanoma families into a behavioral intervention project 
Contemporary clinical trials  2011;33(1):85-92.
Background
Examination of families represents an important priority in health research. In this paper we report on individual and family-level factors associated with enrollment in a cancer prevention research project. We approached families affected by melanoma for possible participation in a randomized controlled trial of a web-based communication and support intervention.
Methods
We recruited three family members per family for assessment – the melanoma case, a first-degree relative (FDR), and a relative who is a parent of a child age 18 or younger. Recruitment involved three steps: requesting the physician’s consent to approach the melanoma case, approaching the case to request their participation and family contact information, and they approaching the FDRs and parents.
Results
Of the 1380 families approached, 313 were enrolled, 263 were excluded because we could not find or contact a family member (FDR or parent), 331 did not have eligible family members, and 473 refused. The most frequently noted reason for refusal was being too busy or having no time. The primary predictors of participation for cases, FDRs, and parents included higher educational attainment (OR’s=1.5–2.15); FDRs were more likely to enroll if they were female (OR=1.77), parents were more likely to enroll if the case had been diagnosed more recently(OR=3.3), if the parent was partnered (OR=4.37), and if the parent lived in the same city as the case(2.88).
Conclusions
The results can provide information on the potential generalizability of family recruitment.
doi:10.1016/j.cct.2011.09.016
PMCID: PMC4159354  PMID: 22001361
Recruitment; Family; Response rates; Behavioral intervention; Melanoma
17.  Information and communication technology use by female residents of public housing 
mHealth  2016;2:39.
Background
Evidence suggests that Internet, mobile, or social media based-interventions may promote obesity-lowering behavior change, which has implications for cancer prevention and control interventions. However, the uptake of communication technologies among low socioeconomic status individuals, who need obesity management strategies most, is unclear.
Methods
Using the baseline data from a cluster-randomized behavioral intervention trial, we examined the cross-sectional associations of frequency of information and communication technologies (ICT) use among female public housing residents, as well as the variation of ICT use across demographic and health-related variables.
Results
ICT use was common among female public housing residents, with mobile use for calls and texts most prevalent (97% and 84%, respectively). Internet, social media, and health information users tended to be younger compared to non-users. Email, Internet, multimodal, and health information users were more likely to be born in the U.S. and be more highly educated than non-users. Social media and health information users were more likely to be Spanish speakers and people of Hispanic ethnicity compared to non-users, although this was not statistically significant. There were few differences according to obesity or physical activity level.
Conclusions
Our findings of differential socio-demographics between users vs. non-users suggests that future cancer prevention and control interventions among public housing residents should consider selecting ICT that are aligned with the usage patterns of different groups making up the intended audience.
doi:10.21037/mhealth.2016.10.01
PMCID: PMC5148151  PMID: 27942534
Medical informatics; health status disparities; public housing
18.  Pilot and Feasibility Test of a Mobile Health-Supported Behavioral Counseling Intervention for Weight Management Among Breast Cancer Survivors 
JMIR cancer  2016;2(1):e4.
Background
Health behavior and weight management interventions for cancer survivors have the potential to prevent future cancer recurrence and improve long-term health; however, their translation can be limited if the intervention is complex and involves high participant burden. Mobile health (mHealth) offers a delivery modality to integrate interventions into daily life routines.
Objective
The objective of this study was to evaluate the effects of a one-group trial with a pre-post evaluation design on engagement (use and acceptability), physiological (weight), behavioral (diet and physical activity), and other secondary outcomes.
Methods
The 10-week intervention consisted of mHealth components (self-monitoring of selected diet behaviors via daily text messages, wireless devices to automatically track weight and steps) and 4 motivational interviewing–based technology-assisted phone sessions with a nonprofessionally trained counselor. Participants were overweight breast cancer survivors who had completed treatment and owned a smartphone. Weight was measured objectively; diet and physical activity were measured with brief self-reported questionnaires.
Results
Ten women participated; they had a mean age of 59 years (SD 6), 50% belonged to a racial or ethnic minority group, 50% had some college or less, and 40% reported using Medicaid health insurance. Engagement was high: out of 70 days in total, the mean number of days recording steps via the wristband pedometer was 64 (SD 7), recording a weight via the scale was 45 (SD 24), and responding to text messages was 60 (SD 13); 100% of participants completed all 4 calls with the counselor. Most (90%) were very likely to participate again and recommend the program to others. Mean weight in pounds decreased (182.5 to 179.1, mean change −3.38 [SD 7.67]), fruit and vegetable daily servings increased (2.89 to 4.42, mean change 1.53 [SD 2.82]), and self-reported moderate physical activity increased in metabolic equivalent of task (MET) minutes per week (2791 to 3336, mean change 545 [SD 1694]).
Conclusions
Findings support the conduct of a fully powered trial to evaluate the efficacy of mHealth as a feasible intervention modality for breast cancer survivors. Future research should employ accelerometer-based physical activity assessment and consider development of an all-in-one app to integrate devices, messaging, and educational content and other mHealth approaches to support behavioral counselors conducting weight management interventions.
doi:10.2196/cancer.5305
PMCID: PMC5066594  PMID: 27761518
telemedicine; survivors; breast neoplasms; health behavior; body weight
20.  Short-term Effects of a Smoking Prevention Website in American Indian Youth 
Background
The rate of smoking commercial tobacco products among American Indian youth is double the rate for white youth. Interventions are needed to reduce this disparity.
Objective
To test the feasibility of a Web-based intervention to influence attitudes toward and intentions about smoking cigarettes among American Indian youth who attended a Native summer camp in the Northern Plains.
Methods
The study website, the SmokingZine, was originally developed and tested in Canadian youth, then adapted to be appropriate for American Indian youth. We conducted a randomized controlled trial to test the influence of exposure to the adapted SmokingZine website on smoking attitudes and behaviors among American Indian youth 12–18 years of age. Participants assigned to the intervention group were given access to the website for 1 hour per day during their camp experience and asked to sign in to the site and use it. Control group participants were not given access to the site.
Results
A total of 52% of intervention youth signed in to the website at least once. Among nonsmokers, intentions to try a cigarette in the intervention group declined from 16% to 0%, and increased from 8% to 25% in the control group (P < .05). Compared with the control group, youth in the intervention group were more likely to help others quit (21 percentage point change in intervention versus no change in control; P < .05) and had less positive attitudes about the drug effects of smoking (–0.19 change in intervention versus 0.67 in control; P < .05).
Conclusion
These data indicate that SmokingZine needs more long-term, rigorous investigation as a way to keep American Indian youth from becoming regular smokers. Because the intervention group could use computers only 1 hour per day, increasing access might result in more visits and a greater effect of the website on smoking behaviors.
doi:10.2196/jmir.1682
PMCID: PMC3799607  PMID: 22659390
Smoking prevention; Native American; eHealth; intervention; cultural appropriateness
21.  Resident Health Advocates in Public Housing Family Developments 
Family & community health  2015;38(2):141-148.
Translation of research to practice often needs intermediaries to help the process occur. Our Prevention Research Center has identified a total of 89 residents of public housing in the last 11 years who have been working in the Resident Health Advocate (RHA) program to engage residents in improving their own and other residents’ health status, by becoming trained in skills needed by Community Health Workers. Future directions include training for teens to become Teen RHAs and further integration of our RHA program with changes in the health care system and in the roles of community health workers in general.
doi:10.1097/FCH.0000000000000068
PMCID: PMC4354934  PMID: 25739061
community based participatory research; employment training; health promotion; community health workers
22.  Acceptability and feasibility of a virtual counselor (VICKY) to collect family health histories 
Purpose
To overcome literacy-related barriers in the collection of electronic family health histories, we developed VICKY, an animated “virtual counselor”. This study examines the acceptability and accuracy of using VICKY to collect family histories, among underserved patients, compared to My Family Health Portrait (MFHP).
Methods
Participants were recruited from a patient registry at a safety net hospital and randomized to use either VICKY or MFHP. Accuracy was determined by comparing tool-collected histories to those obtained by a genetic counselor.
Results
A total of 70 participants completed this study. Participants rated VICKY easy to use (91%) and easy to follow (92%), would recommend VICKY to others (83%) and were highly satisfied (77%). VICKY identified 86% of first degree relatives, and 42% of second degree relatives; combined accuracy was 55%. Compared to MFHP, VICKY identified a greater number of health conditions overall (49% VICKY vs 31% MFHP, IRR: 1.59, 95% CI 1.13, 2.25, p=.008); in particular, hypertension (47% vs 15%; IRR = 3.18; 95% CI: 1.66, 6.10; p=.001) and type 2 diabetes (54% vs 22%; IRR = 2.47; 95% CI: 1.33, 4.60; p=.004).
Conclusion
These results demonstrate that technological support for documenting family history risks can be highly accepted, feasible, and effective.
doi:10.1038/gim.2014.198
PMCID: PMC4503525  PMID: 25590980
family health history; genetic literacy; health literacy; validation; sensitivity; My Family Health Portrait; relational agent
23.  Participant views on consent in cancer genetics research: preparing for the precision medicine era 
Journal of Community Genetics  2016;7(2):133-143.
The Precision Medicine Initiative (PMI) has created considerable discussions about research participant issues including re-consent and how and when to incorporate the patient experience into clinical trials. Within the changing landscape of genetic and genomic research, the preferences of participants are lacking yet are needed to inform policy. With the growing use of biobanks intended to support studies, including the national research cohort proposed under the PMI, understanding participant preferences, including re-consent, is a pressing concern. The Participant Issues Project (PIP) addresses this gap, and here we present data on participant attitudes regarding re-consent and broad consent in research studies. PIP study participants came from the Northwest Cancer Genetics Registry and included cancer patients, relatives, and controls. Thirty telephone interviews were conducted and analyzed using content and thematic analysis. Results indicate that in some scenarios, re-consent is needed. Most participants agreed that re-consent was necessary when the study direction changed significantly or a child participant became an adult, but not if the genetic variant changed. Most participants’ willingness to participate in research would not be affected if the researcher or institution profited or if a broad consent form were used. Participants emphasized re-consent to provide information and control of the use of their data, now relevant for tailored treatment, while also prioritizing research as important. In the era of precision medicine, it is essential that policy makers consider participant preferences with regard to use of their materials and that participants understand genetic and genomic research and its harms and benefits as well as what broad consent entails, including privacy and re-identification risks.
doi:10.1007/s12687-015-0259-8
PMCID: PMC4796049  PMID: 26801345
Participant views; Precision medicine; Consent; Re-consent; Broad consent; Genetics
24.  Possible socioeconomic and ethnic disparities in quality of life in a cohort of breast cancer survivors 
PURPOSE
This paper describes the ethnic and socioeconomic correlates of psychosocial functioning in a cohort of long-term nonrecurring breast cancer survivors and determines the contribution of ongoing difficulties, including symptoms and concerns about cancer, to the ethnic and socioeconomic differences in functioning levels.
METHODS
Participants (n=804) in this study were women from the Health, Eating, Activity, and Lifestyle (HEAL) Study, a population-based, multicenter, multiethnic, prospective study of women newly diagnosed with in situ or Stages I to IIIA breast cancer. Measurements occurred at three timepoints following diagnosis (average 6.1 months following diagnosis, at approximately 30.5 months post diagnosis, at approximately 40.6 months post diagnosis). Outcomes included standardized measures of functioning (MOS SF-36).
RESULTS
Overall, these long-term survivors reported values on two physical function subscales of the SF-36 slightly lower than population norms. Black women reported statistically significantly lower physical functioning scores (p=0.01), compared with White and Hispanic women, but higher mental health scores (p<0.01) compared with White and Hispanic women. In the final adjusted model, race was significantly related to physical functioning, with Black participants and participants in the “Other” ethnic category reporting poorer functioning compared to the White referent group (p<0.01, 0.05). Not working outside the home, being retired or disabled and being unemployed (on leave, looking for work) were associated with poorer physical functioning compared to currently working (both p<0.01).
CONCLUSION
These data indicate that race/ethnicity influences psychosocial functioning in breast cancer survivors and can be used to identify need for targeted interventions to improve functioning.
doi:10.1007/s10549-006-9479-2
PMCID: PMC2999962  PMID: 17260096
25.  How We Design Feasibility Studies 
Public health is moving toward the goal of implementing evidence-based interventions. To accomplish this, there is a need to select, adapt, and evaluate intervention studies. Such selection relies, in part, on making judgments about the feasibility of possible interventions and determining whether comprehensive and multilevel evaluations are justified. There exist few published standards and guides to aid these judgments. This article describes the diverse types of feasibility studies conducted in the field of cancer prevention, using a group of recently funded grants from the National Cancer Institute. The grants were submitted in response to a request for applications proposing research to identify feasible interventions for increasing the utilization of the Cancer Information Service among underserved populations.
doi:10.1016/j.amepre.2009.02.002
PMCID: PMC2859314  PMID: 19362699

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